When we left the hospital that Monday we were advised that this would be a good time to tell Kendall about her brother’s diagnosis. We had thought that we might wait until he got “sick” and then tell her. Let her enjoy the innocence for as long as she could, but we learned that she needed this “gift of time” just as much as we did. And we were also told that she knew something was different anyway, kids know these things the doctors said, so it was time to tell her. One of the things that we dreaded most since learning about Menkes Disease was telling Kendall that her brother had it.
Everyone said have a second child, everyone said Kendall needs a sibling; we agreed, and now we had given her the best gift ever and he was going away, forever.
Tom was very scared to have a second child. He felt like our “perfect” life was a delicate balance and that we shouldn’t challenge happiness. Now, he was going to have to tell his only daughter that she would lose her only brother. “Perfect” was a word we no longer knew.
TJ and I were gone when he told her. It was Tuesday, Daddy Daughter Date Night. I’m not sure why he did it without me; it’s ok, I’m not mad or anything, we don’t have that kind of a relationship where things have to be monumental. I guess I just thought he’d need the moral support. Tom tells me it went like this:
He said, “TJ is sick, his body doesn’t work right, he is going to die and go to heaven. I am so sorry” (We had been advised to use precise language, real terms like death and dying. The doctors said that is better for children, it avoids confusion).
Kendall said, “But we’re gonna miss him. He’ll be gone forever and we won’t see him anymore. And what if he gets the doctors sick?”
Tom answered, “Yes, we will miss him, but he’ll be in heaven and one day, a long time from now, we’ll all be together again in heaven.” He went on, “Grandma Katie and Grandma Helen are in heaven and so is Mom’s sister, Mary.” And, “It’s not that kind of sick honey, TJ was born with a body that doesn’t work right, so it’s different, no one can catch it.”
Kendall responded, “But we’re gonna miss him.” And then went off to play, like only a three year old can.
Yes, baby girl, we’re gonna miss him!
Since then, Kendall has not wavered in her love and affection for TJ. One of the most beautiful things for us is her pure innocence. It's beautiful and heart wrenching. She believes without a doubt that heaven exists. Thank you God for that. She also believes that her and "bruder" are going to get married. She says they'll have kids and Daddy and I will be the grandma and grandpa.
I wish that were the case sweety. I wish we could keep you both forever, but that's not the story that God wrote. So we'll keep each other in our hearts forever.
I love you little guy! Let your faith be bigger than your fears.